Topics: Funding and Donors for Harm Reduction; Harm Reduction Services and Service Provision

Presenting author:
Annette Verster

Presenting author biography:

Annette Verster works at the HIV department of the World Health Organization in Geneva. She leads the work on key populations, including on harm reduction and people who use/inject drugs.

To serve or to measure, that is the question.

Annette Verster, Virginia Macdonald, Bradley Mathers

Issue: The framework for reaching the 90/90/90 targets asks countries to report against an ‘HIV prevention-testing-treatment-retention cascade’, disaggregating data by gender, age and key population group including people who use drugs (PWUD). While there are structural barriers for PWUD to access services and be retained on the ‘cascade of HIV services’, additional challenges exist for measuring coverage along this cascade.
Setting: Obtaining accurate and reliable data about people whose behavior is stigmatized and criminalized is challenging in most settings, including when measuring HIV testing and treatment coverage.
Key arguments: Size estimates help plan HIV responses and provide a denominator for indicators measuring coverage along the cascade. Different data sources can be used to measure cascade indicators including case-based surveillance, patient monitoring, programmatic data and surveys. Unique identifier codes can be used to de-identify sensitive personal data and potentially track patients across the cascade. All these methods and sources have limitations for collecting and disaggregating data. Further, collating or linking data from different sources can be problematic and compromises a reliable cascade analysis.
Collecting and using data on stigmatized risk behaviours and route of HIV transmission has important implications for the individual and for clinical service provision. Data security, maintaining anonymity and potential impact on service accessibility must be considered.
Key population group definitions do not typically account for changes in behavior over time while a person can stop or start injecting at any point along the cascade; their status as a current or past drug user may or may not have clinical relevance depending on the circumstance.
Conclusions: Understanding the HIV cascade for PWUD is complicated and requires a more nuanced approach than ‘simple disaggregation’ in data collection and analysis. We propose a rethinking of what data can meaningfully measure progress in providing PWUD with services along the HIV cascade.